Understanding Autism – Why does NJ have the nation’s highest rate?
While the cause of autism remains a mystery researchers at the Rutgers New Jersey Medical School in Newark are continuing to try and figure out why the Garden State's rate has increased over the past decade and remains the highest in the nation.
One in 45 children in New Jersey is diagnosed with autism spectrum disorder, compared to one in 68 nationally, according to federal statistics compiled in 2010 and unveiled last spring. The U.S. Centers for Disease Control and Prevention releases new rates every two years.
The New Jersey Medical School has been working on a special project looking to identify whether there are any perinatal risk factors for autism, according to Walter Zahorodny, Ph.D., principal investigator of the New Jersey autism study.
Confirmed autism cases defined through a surveillance project were matched to birth certificate files and to hospital treatment and discharge data, according to Zahorodny. He plans to compare the information of children born in the region at the same time, "to see if there are any systematic differences in either the obstetric conditions or the conditions of the delivery or the neonatal circumstances of the child to see if there are any influences on development of autism."
The New Jersey Medical School is in the process of concluding its 2012 surveillance activities -- similar to a 2010 study -- in a region among 8-year-old children to see if the autism rate is getting higher or stabilizing. The 2012 study includes four counties: Essex, Union, Hudson and Ocean.
"That region has a population of about 32,000 8-year-olds. That's kind of normal for us. Overall, the population that the whole network (consisting of 11 states) is looking at for that study year will be in the vicinity of 360,000 or 370,000, which is of course a large group. We are the largest multi-site epidemiologic study in the United States," Zahorodny said.
The New Jersey Medical School participated in a Pilot Study with four other states included in The Autism and Developmental Disabilities Monitoring Network, a group of programs funded by CDC to estimate the number of children with autism spectrum disorder and other developmental disabilities living in different areas of the U.S. The ADDM Network sites all collect data using the same methods.
Zahorodny said they wanted to see if they could use the same type of autism case finding study, similar to what was used in New Jersey Medical School's main surveillance project, to try to identify children with autism at a younger age. During the Pilot Study in 2010, the New Jersey Medical School focused on about 17,000 children who were four years old and born in 2006 in Essex and Union counties.
"We have already established the prevalent estimate for that cohort as did the other states participating in the network, and now we're in the process of submitting that report for publication," Zahorodny said.
Essex County is one of the largest and most populated counties in New Jersey and Union is an adjacent county.
"Together they have a very significant diverse population and from my perspective, Essex and Union County come pretty close to representing the kind of demographic mix that we see in all of metropolitan New Jersey or the New York Metropolitan area," Zahordny said.
He said the findings are interesting, but because they are embargoed he was unable to divulge any of the specifics
"It does, in my opinion, show two important things, one that the methodology that we were using for 8-year-olds is effective for making estimates of autism among younger children. Definitely the methodology in a state like New Jersey is robust and gives us sufficient information," he said.
Zahorodny also said he's not surprised by the overall findings.
"In my opinion, they basically reflect the long standing kind of observation that New Jersey is a leading indicator of autism," he said.
A report on the findings has been submitted to a journal for consideration and if it's accepted, Zahorodny said it's likely it would not be printed until late spring or early summer.
Autism studies involve large, diverse populations and Zahorodny said they're still studying the total population, including all boys and all girls of a particular age, using the same methodology and case finding strategies to find girls with autism.
Boys are nearly five times more likely than girls to have autism, according to the CDC. In New Jersey, it's one in 28.
"In fact, it's been the rise in autism among boys that's been the major driver of the overall prevalence estimate," Zahorodny said. "While the rate among autism among girls has gone up significantly in the 10-year period, it's gone up about 100 percent. The rate among boys has increased more than 200-percent."
Researchers also don't understand why boys are more vulnerable or why the rate is accelerating more for boys.
"It's not that autism only went up for one sub-group or sub-type, or only went up for girls, or some racial or ethnic group had an increase. The rate went up so dramatically across all the categories that we look at, that to me, that was by itself very convincing evidence that it was broad and true increase not just a phenomenon of better case finding or better awareness," Zahorodny said.
In addition to trying to identify perinatal risk factors, The New Jersey Medical Center is trying to understand the burden on families and the ways in which interventions are being tried to help children or individuals with autism.
The survey will serve as another research tool to determine what kinds of interventions families are using and which ones are more effective than others.
Survey packets can be requested by calling toll-free, 888-699-8038 or emailing firstname.lastname@example.org .
Zahorodny said they've already accumulated more than 1,100 participants since beginning the survey four years ago and they are just beginning to dissect the information.
As autistic individuals reach adolescence, New Jersey has a system called "Person Center Planning," beginning at age 14. The transition focuses on an Individualized Education Program (IEP) in which adolescents work on gathering the people that know them the best to determine future goals, according to Jonathan Sabin, director of the Office on Autism at the Office for Prevention of Developmental Disabilities at the New Jersey Department of Health and Human Services Division of Developmental Disabilities.
"It could be school, family, clergy, people who really have a role in that individual's life," Sabin said. "Most folks living with a mental disability have the same types of aspirations that you or I have."
Once those goals are outlined, Sabin's department tries to orient the types of services the state offers around what individuals with mental disabilities want, whether it's educational or vocational.
Sabin said New Jersey has come a long way in setting up the kind of supports and initiatives to help people with mental disabilities find work and to help them live in communities and fulfill their goals.
"We're in the process of a system reform here at DDD and this summer we tend to be rolling out our supports program, which will provide expanded types of services, such as career planning, free vocational training, community-inclusion services," Sabin said.
In addition, the Department of Developmental Disabilities also has increased the number of places where individuals can live in New Jersey, according to Sabin.
"Individuals don't need to live in institutions. Individuals live in our communities. They live with us in our towns and they are out doing things in communities just like you and me," he said.
There's also encouraging news about job placement for individuals with disabilities, including those with autism. After seeing data about the autism rates in New Jersey and recognizing a need to offer more for that particular disability, the New Jersey Department of Labor's Division of Vocational Rehabilitation decided to provide innovation funding for autism-specific employment opportunities, according to Alice Hunnicutt, the division director.
"Over the past four years, I believe we've pushed over $2 million worth of grants specific to individuals with autism who want to get employment," Hunnicutt said. "The Department of Labor in general has a host of opportunities and incentives for businesses who want to hire individuals who have barriers to employment and people with disabilities are included in that caveat, so we can do things like provide on the job training."
With autistic students now graduating and with recent laws around special education that provide higher expectations, families also are having higher expectations for their sons and daughters to go into competitive integrated employment, according to Hunnicutt. The Vocational Rehabilitation Division provides specific autism training for its counselors on a regular basis.
"I would like to think that New Jersey is really ahead of the game in terms of the vision and where we need to go and we're working to do that," Hunnicutt said.
It appears New Jersey employers are also embracing individuals with disabilities.
"Last year we had a record number of placements, a ten percent increase from over the year before. 4,439 individuals, not just with autism, but with disabilities were actively placed and are now taxpayers as opposed to tax users in New Jersey," Hunnicutt said.
Hunnicutt pointed out that years ago there were no specific laws guiding the education of people with disabilities and that they weren't placed in regular schools, but the private sector today is embracing these individuals.
"Now, CEOs in their 40s and 50s have been in school and have been included and have grown up with people with disabilities, and I think just having been exposed to again that diversity, people are going to be able to embrace that opportunity more. And I think our incentives and I think our statistics around why it's important to hire individuals with autism have made a difference as well," Hunnicutt said.
She also credited the federal government's recent inclusion of guidelines providing hiring utilization rates for any federal contractor.
"They are now required to in a positive recruitment way, actively seek to hire individuals with disabilities," Hunnicutt said.